Hi to all of you wonderful & helpful fellow Thyroid suffers.
This is my first post but I have been watching & reading from afar for the last few years.
I was diagnosed with Hypothyroidism/ Hashimotos in 2008 at the time my TSH levels were off the scale at 100+ and my T4 was 2.8.
My symptoms were:
Complete exhaustion (slept 20 hours a day), Nausea (couldn't eat), muscle pain, heavy arms & legs, very weak and excessive weight gain. I was then put on Levothyroxine gradually increasing to 250mcg. My symptoms very slowly started to ease but I have never felt completely better. I still am exhausted, have muscle pain, heavy arms & legs and I haven't been able to loose the five stone I put on in 2008.
I kept going back to my GP and was then referred to a Rheumatologist in 2010. After prodding & poking me in various places he then diagnosed me with Fibromyalgia/ Chronic Fatigue Syndrome (which I had never heard of at the time). Since then, I've been backwards & forwards to my GP having various blood tests and only after having many low cortisol readings did I finally get to see an Endocrinologist.
It has taken many years to get to this point but I've now seen my local Endo twice. I have my next appointment this Tuesday and was wondering if anyone could help/advise me as I'm not getting anywhere with him. He did agree to give me a trial of T3 (20mcg) which I've taken on & off but he now wants me to come off it. With regards to my low cortisol, I've had various special tests to check my adrenal function, all of which came back as normal (even though I still have consistently low cortisol levels).
On my last visit to Mr Endo, he said there was nothing more he can do and said my ongoing symptoms were due to my Fibromyalgia/CFS, not an Endocrine problem. So I feel that I'm yet again at the end of the line and he will probably say on Tuesday there's nothing more he can do. He seems to ignore my low cortisol levels as he said I've had all the relevant adrenal tests. To me, it can't be a coincidence that the so called Fibromyalgia/CFS diagnosis came after my Thyroid packed up? I still believe my symptoms are down to an endocrine problem, not Fibromyalgia/CFS.
Both Mr Endo & my GP says I should eat less & exercise more to loose the five stone weight gain. Bearing in mind, I am a vegetarian and I don't eat fried food, fast food or drink alcohol. I'm not sure how I can loose this extra five stone as I've tried everything and I'm too exhausted to exercise.
Please help as it looks like I'm just going to be left... fat... in pain... & sleep for the rest of my life!!!
My latest blood results are:
TSH: 0.03 (Range: 0.35-5)
T4: 16.6 (Range: 9-19) On Levothyroxine - 250mcg.
T3: 5.5 (Range: 2.6-5.7) On Liothyronine - 20mcg.
Vit B12: 458 (Range: 150+)
Vit D: 41 (Range: 75-200) On Fultium D3 - 3,200IU (80mcg).
Iron: 46 On Ferrous Fumarate - 420mg.
Folate: 4.1 (Range: 3.1+)
Please help... Thank you in advance.
Written by
JosieMouse
To view profiles and participate in discussions please or .
Makes me sooooo angry. Why is it when you get diagnosed with fibromyalgia it gives the health professionals an excuse to get you off their books and stop treating you. I just had this happen to me with a rheumy registrar at my last appointment. She ignored everything I said to her and told me everything I was experiencing was down to osteoarthritis and fibromyalgia and discharged me back to my GP using the excuse that my last blood tests shows no inflammation. My last blood test was 6 months ago and I feel worse now than I did a year ago when diagnosed with sero neg RD. I have tried so hard to get someone to test me fully for hypothyroidism which I am certain is the problem. Not only do I have a lot of the symptoms and TSH of 5.83 at last blood test but I just cannot lose weight (which is still increasing) no matter what I do. Sorry dont have the answer for you and sorry for the rant. Gentle hugs Joolz.x
I'm sorry to hear you're not getting anywhere fast with your GP too.
I do feel that once you're put into a 'Fibromyalgia Box' then you're just left there to rot!
I met Louise Warvill from Thyroid UK at a Fibromyalgia conference a couple of years ago. She's a great, fantastic & lovely lady! She was a speaker at the conference and she opened my eyes to the fact that my symptoms may not be down to a Fibro condition but a continuation of my Thyroid problems that haven't been properly treated. It was only after speaking with her face to face during the conference that I now question my Fibro diagnosis and believe my ongoing symptoms are down to a continuing Endocrine/ Thyroid problem. After all, I was fine until my thyroid packed up!
With regards to your situation, I've found that if I'm too nice & don't push my GP to get tests done then they don't happen. It seems that they wait until you're on your knees and bed ridden before they do anything. My GP watched my iron levels plumet over two years and it was only when it got sooo low that they prescribed Ferrous Fumarate. So I guess the only thing you can do is to keep gently pushing your GP to give you a full Thyroid Function Test. Either that, or try a different doctor in your same practice? I've found that different doctors (especially new ones) are a bit more helpful. Good luck on your quest and thank you so much for the gentle hugs. Josie Mouse x
I lost my lovely GP when she moved from our surgery and her replacement lasted just 3 months so unfortunately the surgery Im at is nearly all locums but I hope to see the main GP this week for a double appointment and am going armed with my list of questions. In reply to your P.S This is our lovely boy Eddie he is just 5 months old and brings so much joy into our lives. We lost our little Charlie dog last October and it broke our hearts. I hated the house without a dog so I started looking around not to replace Charlie just to have a dog in our lives. I just happened upon an ad in a pet shop window for this little boy who we saw at 2 weeks old and fell for straight away and couldnt wait to pick him up when he was 9 weeks old. He is crossed with collie x lab x staffy and so loving and intelligent. Sorry I do ramble when I get started. enjoy the rest of your day. Joolz.X
No need to apologize about rambling. I'm queen of ramblers! (According to my Mum anyway).
I'm so, so sorry to hear about Charlie. I'm still grieving for my little Josie Mouse (pictured above). She's now buried in my back garden and I talk to her flower bed all the time! I can't bring myself to get another dog yet and it's been a year. Still brings tears to my eyes just writing this. I'm quite traumatized with what happened and think I always will be as someone poisoned her. My vet said she was poisoned with antifreeze. Apparently people put antifreeze into meat/tuna to kill cats and all animals love the taste as it's sweet, but it's a awful hideous killer! Josie went through hell & back being pumped with every drug going for seven days before the vet called me in to tell me she's not going to make it. Josie was my world... I don't have a husband or any children.
Mopping up my tears...
Your Eddie looks gorgeous!
His face has so much character.
Non animal lovers do not appreciate how much love & joy a dog can bring.
Getting back to your GP situation, is it worth trying to move surgeries? As I find having continuity with just one GP is hard enough, yet alone constantly having to go over old ground seeing different locums each time, especially when you only have a ten minute slot it's a race to get them up to speed! Going armed with all your questions is a great plan though. I did that last time I saw my Endo. I typed all my questions out clearly (using a large font) on a sheet of A4 and left plenty of gaps to scribble his answers/ reply's. In fact, he did the scribbling and my ten minute appointment turned into half an hour! So it's great you've got a double appointment!
That is absolutely awful what you have been through with your little Josie Mouse there are some evil people around. how can anyone even think to do something like that to hurt animals. They must be sick. You must be going through so many emotions for your little sweetheart dog. She looks sweet. Similar to my Dads little dog who helped him through when my Mum died suddenly. Dogs are amazing.
Thank you so much for your support and suggestions. Take care and gentle hugs Joolz.x
I am the exact same as you, being tested for my cortisol levels in 2 weeks time. Ive been on levothyroxine for 10 years now, been up and down with dosage over the years, especially through pregnancy. Never felt fully well, never feel rested, always tired and huge weight gain, 3 1/2 stone. Still feel run down and tired all the time. GP checked my bloods and my iron levels are low, im on iron tablets, have been for 12 weeks and still feel the same, hes now upped my throxine by 25mcg to 150 mcg and been on these 4 weeks, getting bloods done again in 2 weeks, I feel there is something more to this than just thyroid problems. Hope you get a resolve to your problems.
It's good to know that I'm not the only one out there facing these symptoms & problems. At the same time, I'm sorry to hear you're having a hard time too. It can't be a coincidence that a lot of us pile on the weight. My GP says that I shouldn't have a problem with loosing the five stone increase as I'm now 'In Range' and says it's all down to intake versus output. Which is ridiculous as my intake is quite low and I've never had a baby. Before my thyroid packed up I was a size 10 and then in less than a year after being diagnosed I became a size 20!!!
Good luck with your cortisol tests. Please do keep me posted with how you get on.
Well I'm not an expert by any means, but what is staring me in the face is that your vit D is too low despite your supplementation and also your ferritin as well,that should be between 70-90. I'm assuming that what your iron result is, Have you ever had your thyroid antibodies tested, do you have any digestive issues that might indicate coeliac disease or gluten/lactose intolerance? Have you considered trying a gluten free diet? It might sound off the wall, but I lost a stone without trying (or giving up crisps/chocolate) when I went gluten free after a negative coeliac blood test and sick of suffering terrible dodgy digestion. I would swear that is related to the thyroid issues I take privately prescribed medication for, but the NHS swear blind there's nothing wrong with my thyroid according to my blood results. I requested a copy of my blood tests and the ones that were off were vitamin D and ferritin. Just a thought if they're blaming fibromyalgia for all your problems.
I should have said that the blood results are before I started taking Vitamin D. So hopefully that should have increased by now. I've just had more blood taken last week in advance of my Endo appointment tomorrow so hopefully both my iron & Vitamin D will have increased.
I have had my thyroid antibodies checked a few times and they always come back as 'Positive' but the GP says he expects that. Not sure why? But nothing more is said about it.
I have been tested for coeliac disease and it came back negative, like yours. But it's interesting to hear that you've lost weight and feel a bit better by going gluten free. I shall look into it. Thank you.
Thank you for that. I shall have a look at it. Though I still believe my ongoing symptoms are down to a Thyroid/ Endocrine related problem. But thank you, I'll still take a peep.
Have a look at her site in general all these things are interlinked. If I went by a blood result I wod not feel well on the dosage prescribed. I self medicate and use my clinical status.
It's just too easy to 'diagnose' fibro and cfs (although how they justify 'diagnosing' with a symptom, I just Don't know!) and then dismiss everything the patient says. But they are totally out of their depths, I'm afraid, and you're going to have to take control of your own health from now on.
Firstly : "He did agree to give me a trial of T3 (20mcg) which I've taken on & off"
What do you mean by 'on and off'? do you mean he prescribed it from time to time? Or do you mean you sometimes forgot to take it??? If the latter, well, how do you expect it to work if you Don't take it? It is so vitally important to take your hormone religiously every day. (If you didn't mean that, I apologise for scolding you. lol)
On paper, your FT3 doesn't look too bad, BUT... The blood test only shows what's in your blood, not what's being taken up by your cells. It could be that you have some form of hormone resistance, which would mean you need your T3 to be over the top of the range. But if your cortisol is low, that could explain it. You need good levels of cortisol to be able to use the hormone you're taking.
So are you still taking 250 mcg Levo and 20 mcg T3? That's quite a high dose, but your levels Don't reflect that. Which should have alerted your endo to the fact that something is not quite right. But, obviously, he and your doctor are not thyroid literate! Do you have your cortisol test results to show us, so that we get a better picture of what is going wrong? If so, post them in a new thread so that everyone can see.
Your iron (is that iron or ferritin?), folate and vit d are too low - which is what one would expect with a vegetarian - and your B12 could be much higher - the sky's the limit with B12! If you're not going to eat meat, you really, really must supplement these nutrients, you can't live without them.
So, you Don't eat meat and you Don't eat fried foods. But it's not what you eat that has made you put on weight, it's your low metabolism due to lack of thyroid hormone. Going on a diet and exercising more won't make you lose it, and could make you put on more! But you do need protein. What is your source of protein? Do you eat dairy? Eggs? Fish? Do you get enough fat - butter, olive oïl, coconut oïl, avacados? Do you get enough salt??? The adrenals need plenty of salt. And bucket loads of vit C! Are you taking vit C? It could also help you absorb your thyroid hormone, and is essential to take with iron suppléments to help absorbiton and avoid constipation.
And talking of constipation... Is that one of your symptoms? Do you have problems with your ears at all? Then you're probably low on magnesium - most people are, and being hypo will make that even more likely. Try taking some and see how you feel.
And, finally, have you been tested for antibodies? Most hypo these days is caused by the autoimmune disease, Hashimoto's. If you have that, then going gluten-free will probably help you a lot. Definately Worth a try.
So, when you've answered all these questions, we'll be able to see more clearly what's going on. Just ignore your doctor and your endo, they Don't know what they're talking about, and you're in charge from hereon in!
Thank you sooo so much for your comprehensive reply.
I'm so touched that you've taken the time to reply so comprehensively.
You are so right, I do feel I have no option but to take control of my own health. It just feels like a mine field though.
You are also right for scolding me with regards to taking my T3. Though I do have an excuse. I found that when I took the morning dose (half a 20mcg tablet), I was okay for a few hours but then I would 'crash & burn' and be utterly exhausted by lunchtime and take to my bed. I found my energy levels went up & down like a yo yo. So that's why I've been taking it on & off.
I found it very interesting what you said about hormone resistance. I didn't realize that was possible? My Endo though would not be happy for my T3 to be over the top of the range. He dosen't mind the T4 being over the top of the range, but not T3. Though I could certainly try it as I have a spare supply?
You also mention I need good levels of cortisol to be able to use the hormone I'm taking. How can I increase my cortisol levels as Mr Endo seems to be ignoring the consistently low levels?
Yes, I am still taking 250mcg of T4 and kind of taking 20mcg of T3. I didn't realize that this was quite high? Mr Endo just says to take as much as it takes to feel better. He didn't say 250mcg was a bit on the high side. I haven't got my cortisol results as it's always hard to get anything out of my GP. But I'll ask Mr Endo tomorrow.
The Vit D levels I posted are before I started taking the Fultium D3 so hopefully by now they should be a bit higher. I'm not sure what's happening with my Ferritin levels. My GP watched them plummet over two years before anything was done. I didn't realize my folate was low? Mr Endo again just dismissed it as it's 'In Range'.
It's VERY interesting that you say "Going on a diet and exercising more won't make you lose weight, and could make you put on more!" How is this possible? My GP keeps telling me, now my T4 & T3 are 'In Range' it's all about intake versus output. Though my intake is quite low but then so is my output as I'm too exhausted to exercise!
With regards to protein. No, I don't get much of that. I don't eat eggs or fish and very little dairy, also no fat either as I'm getting bigger by the minute! I generally live on: Fruit & Vegetables, pasta, rice, jacket potatoes, vegetable pizza and of course some chocolate & ice cream!
I'm not sure about my salt intake. I certainly don't add salt to anything as I'm aware that manufacturers add it by the bucket load to most things. I also wasn't aware that I needed Vitamin C either so I shall certainly add that to my Vitamin shopping list though I don't seem to have a problem with constipation. Not sure why.
I don't have a problem with my ears but now you mention magnesium, I do remember the Rheumatologist back in 2010 saying I was low in magnesium but nothing more was said and I didn't appreciate at the time I should take some.
With regards to antibodies...
Yes, I've been tested a few times and each time it's come back as 'Positive'. But the GP didn't seem surprised and nothing more was said about it. I was never told officially I had Hashimoto's, (just told it's Hypothyroidism). But came to that conclusion myself after doing some research. So I guess having a 'Positive' result for Thyroid Antibodies means I have Hashimoto's?
Can I ask... Why does going gluten-free help? And yes, it's certainly worth a try! Though I have been tested for coeliac disease and it's come back as 'Negative'?
Thank you so much again for your fantastic help & knowledge.
Josie, I hope you’re sitting comfortably, because this is going to be long! lol
Is it a mine-field? Yes. And no. It seems pretty complicated in the beginning, but you soon get used to it. Besides, you’re not alone, we’re all here with you!
No, you don’t have an excuse for not taking it. If taking it in the morning doesn’t suit you, try taking it some other time. There are hundreds of variables. And, it may have been coincidence that when you took it in the morning, you crashed and burned. Or, maybe it was because you need to take more. Or you should take it all in one go (try it before shaking your head lol). Or take it at night. I take all mine at night and I don’t have any problem with crashing and burning. You can still take your Levo in the morning. But rather than just giving up and stop taking it, try something different. Besides, how can not taking it be better than taking it and being fine for a few hours? By taking it on and off, you are screwing up your metabolism. Your poor body doesn’t know if it’s coming or going! It needs regular habits if it’s ever going to heal.
Hormone resistance is possible. But I doubt if your doctor or endo know anything about it. Your endo is obviously somewhat ignorant about hypo if he sticks rigidly to the ranges. And if your FT4 was over the top of the range, and your FT3 was low in range, then you weren’t converting, so adding more and more T4 was not going to help.
He was right in a way that you should take thyroid hormone replacement until you feel well, but it has to be the right hormone replacement for you, and Levo obviously wasn’t doing it for you. But, it would seem, he doesn’t know about that. What you should be increasing is the T3, not the Levo. You’re already on a high dose (most people take around 150, but that doesn’t actually mean that they do well on Levo, they could be under-dosed) but you still have a lot of symptoms. Increasing the Levo is not going to solve the problem – it won’t suddenly start working just like that. But what it might do is convert to rT3, and that will cause a whole bucket of new problems. So, if you’re considering testing privately, add rT3 to your list. RT3 blocks hormone receptors so that the normal T3 can’t enter them. I would think it would be a good thing to lower your Levo by 25 mcg and add in 5 more mcg T3, and see how you go. Don’t ever increase or decrease by too much in one go.
Once again, you have a problem that your endo knows nothing about, so he just ignores it. Your low cortisol could be the reason you don’t convert. How you raise cortisol levels is a totally new subject. As I said, adrenals need salt and vit C. (We’ll get to the salt later!) There are also adrenal supplements you can take such as Nutri-Adrenals. I don’t know much about them – except that they didn’t agree with me – so you’d have to ask a new question about those. They work for some people.
You have a legal right to a copy of your results. Your doctor is legally bound to supply you with one, no matter what his opinion on the subject. No discussion, I want them and I want them now! (This works like a charm when people aren’t expecting it! Only works once though. Lol)
How much vit D are you actually taking? And is it vit D3? I don’t know that brand.
Yes, they’re very fond of saying ‘all in range’, as if it’s some sort of magic spell. But just ‘in range’ is rarely good enough, it’s not the same as optimal. Being hypo you need more of these things than people without thyroid problems. They need to be at least mid-range to be of any use. And you must get that vit B12 tested, it is so important. But, doctors don’t know that…
Your weight gain is not due to what you eat – it has nothing to do with the much-maligned ‘calorie’ – which, after all, is just a unit of energy and not some dreaded monster that lies in wait in your food and makes a bound for your hips at the slightest opportunity. You need that energy. You need it for every single function in your body – digesting, breathing, thinking even. And also for converting T4 to T3. Now, Mother Nature played a cruel little joke on us here, because when calories are in short supply, she decided that converting would be the last in line for a hand-out. So, if there’s a shortage of calories, we don’t convert. No conversion means too little T3, so we end up more hypo, and put on more weight. And as hypos have a harder time converting, they need more calories, not less. If you’re not eating enough, that will affect your conversion. Most anorexics end up hypo.
Forget all that c**p about calories in vs calories out – it doesn’t work and never has. People that lose weight that way usually end up putting it all back on plus some. Body chemistry is far more complicated than that. And people that have been starved end up becoming obsessed with food – I have a dog that can testify to that. Or, read the The Minnisota Starvation Experiment :
And that brings us to exercise… Exercising uses up your calories – I know, that’s why people do it! But over-exercising uses up too many calories that you need for your poor, struggling body – and for a hypos, most exercise apart from walking is over-exercising.
Also, exercising uses up your T3 – in fact, it uses up allllll your hormones : testosterone, HGH, cortisol et al. And you are already hormonally challenged, so using them up on something inessential seems a bit daft, doesn’t it. Besides, you need that T3 to help you lose weight. But it won’t if you use it all up exercising. So, to sum up, exercising uses up your calories, uses up your T3, makes you more hypo and you put on more weight! And, of course, makes you exhausted. And as you’re already exhausted, seems like counter-intuitive to exercise…
It would seem to me that what you need to do is up your intake, nutrient-dense foods, and stop counting calories, count nutrients, instead. Which brings me to your diet…
You. Need. Protein. In fact, being hypo, you need more protein than other people. You cannot live on your diet for very long and be healthy. You need fresh fruit and vegetables, of course; a limited amount of pasta, rice, potatoes – even a bit of chocolate and ice cream, why not! I’m not a fanatic. lol But you also need protein, and fat. Good fats : butter (how do you eat a jacket potato without butter and salt, for goodness sake???), olive oil on your salad, coconut oil for cooking, avocados in your salad…
Eating fat does not make you fat, that is a myth! And one that has cost a lot of people their health! If you don’t eat fat, you will gradually get sicker and sicker, possibly develop diabetes (it is not caused by sugar) and… I’ll leave the rest to your imagination! But you will also put on more and more weight.
I’m a little concerned by what you say about salt. Firstly, that is another thing the medical world has been proved wrong about! You do need salt – but, good salt : sea salt, Himalayan pink salt, Celtic salt, etc. Not the industrial muck they put in processed food! But if you think you get enough salt from your processed food, then you are eating too much processed food!!!
Processed food is very, very bad. It’s not only the industrial salt they use, stripped of all its minerals, but also the trans fats (bad fats) and all sorts of additives and colourings. If you want to recover, you need to start making all your food from scratch. I know that sounds monumental when we’re feeling so tired and ill, but processed foods are just going to make you more tired and more ill. What’s wrong with eggs??? They are so good for you. Full of vitamins and minerals. So necessary for people that don’t eat meat or fish. Honestly, I really think you’ve got to rethink your diet, I’m afraid.
I wouldn’t be at all surprised if you’re low on magnesium. It is really a very important mineral. And, as you’re taking vit D, it would be as well to add some magnesium, and a little zinc and boron (another mineral that works with vit d). And, as this will possibly raise your calcium levels, take some vit K2 to make sure the calcium goes to the bones, and not the tissues.
As to the antibodies – guess what! It’s another thing doctors know nothing about! I doubt if he had any idea it was of importance. Yes, positive antibodies plus low thyroid hormones = Hashimoto’s. But doctors don’t know what to do about antibodies, so they don’t mention them…
Why does gluten-free help with antibodies… Because – and here I’m no expert – but I believe it’s because the antibodies mistake the gluten molecules for the thyroid molecules that they are bent on destroying. Therefore they attack. But I’m sure somebody else could give you a far better answer to that question if you asked it in a new question. All I know is that some people find that going gluten-free makes them feel a lot better, and helps them lose weight. So, worth trying. And, if it doesn’t help, you can always go back to eating gluten. I did.
Tests for Coeliac are notoriously unreliable. There are a lot of false negatives. But even some people without Coeliac find going GF has helped them with their antibodies.
If you have any more questions, please don’t hesitate to ask. If I can’t answer them, somebody else will be able to.
Thank you sooooo, so much for such an in-depth, comprehensive, informative reply!!! Not only have I learnt so much from you but you also made me laugh! You have a great sense of humour. I loved your 'calorie monster' analogy.
I shall print off your reply so I can re-read it and digest it better. My bedtime reading for tonight!
Thank you so much again for taking the time to explain it all in so much detail and by injecting your sense of humour makes it a fantastic read!
JosieMouse, you only need to leave 24 hours between last dose and blood draw.
Crashing and burning after your morning T3 dose is a sign that the first dose has worn off and you need more. Once your T3 levels are good you are less likely to experience crashes and slumps even if you miss a dose. Generally splitting T3 dose between 6-12 hours works for most people. You tweak the timing so the 2nd dose is taken an hour/90 minutes before you slump. I take my first dose of T3 with Levothyroxine in the mornng and my second dose at bedtime.
Thank you for your reply. That does make a lot of sense. Now I know this I will try and persuade Mr Endo to keep me on the T3 as he wants me off (probably because it costs so much!)
Can I ask if you can have food before or after taking T3?
I'm aware that it's best to take T4 on an empty stomach and not to have breakfast till one hour after. Do the same rules apply with T3?
So if I take the first dose of T3 as soon as I get up with the T4. Then one hour later have breakfast. Then need to take the second dose of T3 six hours later. When can I have lunch?
Josie, have lunch whenever you like. Just take the T3 one hour before or two hours after lunch. It doesn't have to be six hours after the first dose, that's simply a suggestion, it really doesn't matter if it's longer. I take mine morning and at bedtime.
Hi when my vitamin d level was 40 i had muscle pains my whole body hurt. I was exhausted had muscle twitches, nausea and thought I had post natal depression. Also because of my low vit d levels my calcium dropped too low which cause a whole range of symptoms. My calcium increased with my vit d i was on 4000iu fultium per day for six weeks followed by 1600iu. When my levels reached 75 the endo took me off them until I crashed again six months later. I now know if I let my levels drop to around 40 I get very sick. Also about six months ago my G.P said that she thought I may have fibro or CFS because I was soooo tired couldn't climb the stairs without getting out of breath, I had nausea and horrible palpitations.
She ran bloods and I was told they were normal I asked for a copy and my folate was slightly low. I supplemented and after three days the symptoms had more or less gone. The supplements cost 99p and if I had not requested a copy of my bloods I probably would have been diagnosed with fibro or chronic fatigue.
My G.P put me on a gluten free diet four months ago. She told me to be very strict and check the labels on everything. I have followed this and I do think I feel better lighter with a bit more energy. I also lost 7lb which was a bit of a bonus as I cant exercise at the min.
It's interesting to hear about you feeling so bad when your Vitamin D dropped below 40. It is crazy that your Endo didn't keep an eye on your levels after he took you off. But then it really doesn't surprise me at all.
Can I ask where you got your Folate for 99p from?
This gluten free diet has come up a few times in this post which is very interesting. Can I ask why your GP put you on it in the first place? Did she test you for coeliac disease? Or did she just think it would be good to try it?
Hi i just bought the folic acid from my local chemist the brand is valuepac.
They took me off the vit d because my levels were normal. They now accept that I have a problem with me absorbing it.
My G. P suggested a gluten free diet as they were unsure if I had an auto immune condition. This has now been ruled out and I still don't know what is going on. I have most hypo symptoms and a large goiter but normal bloods. The G.P said that sometimes its is possible to have an intolerance to gluten even without testing positive for celiac disease.
I ask for a copy of all my bloods because for me sometimes being just slightly out of range causes symptoms.
I hope you feel better once your levels of vit d are within range. It takes weeks for this to happen and I remember that I felt worse before getting better.
There have been studies done that suggest a blunted HPA axis leading to low cortisol in Chronic Fatigue Syndrome so there's not necessarily an underlying adrenal disorder. I was feeling really unwell last year and diagnosed with Chronic Fatigue. My cortisol was low and after the short synacthen test which came back normal was put on t3/t4 combo and left to it.
Just a thought but being Vegetarian do you eat a lot of soy products. I'm Vegetarian and last year decided to up my protein intake and changed to soy milk, soy yoghurt and started eating a lot of meals made with soy protein. Within a month I was more ill than I've ever been with all the hypothyroid symptoms coming back. I didn't know at the time that soy is really bad for the thyroid. I've since changed my diet and started taking supplements and vitamins (multi vit, iron, vit d, zinc, b12 spray and ashwagandha) which is an adaptogen and supposed to balance the adrenals, and after several months I feel a good 80% better. I still get joint pain after doing anything strenuous and tired sometimes if I don't pace myself and I try to do too much but on the whole I feel I'm improving. Added to that I've lost just over a stone since November which is a bonus.
I can't say it will work for everyone but one thing I've learned over the last three years of being ill is that on the whole with thyroid problems you need to take charge and find out what works for you because the GP's in general aren't very thyroid savvy and even Endo's, and I've seen three, all tell you something different and contradict what the last one said.
Another thing which can cause problems is hormone treatment i.e. HRT or Birth control, not sure if any of those apply to you but they can make thyroxine unavailable to the body even though blood levels look good. That is possibly why soy is a problem as well as it's said to increase oestrogen.
It's interesting to hear about the studies suggesting a blunted HPA axis leads to low cortisol in Chronic Fatigue Syndrome so there's not necessarily an underlying adrenal disorder.
I'm sorry to hear how bad soy made you feel. I didn't realize either that soy wasn't good for the Thyroid till I joined this site. Thankfully I don't eat soy products, just fruit & vegetables, pasta, rice & potatoes for me along with some biscuits, chocolate & ice cream!
It's good to hear you're feeling better after taking all your supplements even though not quite 100% yet. Though I haven't heard of ashwagandha before? But will look into it.
Congratulations on your weight loss! I should concentrate more on my vitamin levels too I think. I didn't appreciate how important they were to ones' general health.
You are right, GP's and Endo's don't seem to be "thyroid savvy". I can understand GP's not being very clued up but Endo's are supposed to be specialists in the Endocrine field so if they're not thyroid savvy then there's no hope for any of us!!!
With regards to hormone treatment (HRT or Birth control), no... neither apply.
I'm too young for HRT and don't need birth control. But it's a very interesting point you make as I wasn't aware of it. Something else to look forward to when I reach that age!!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Appointment with Endo booked - need advice re GP and referral
Cortisol more tests to come
